Proactive ‘Caregiver Pathway’ Mitigates Long-Term PTSD and Anxiety in Families of ICU Survivors

The Caregiver Pathway: Mitigating the Psychological Toll of Critical Illness on Families

Highlights

The Caregiver Pathway intervention significantly reduced PTSD symptoms in family caregivers at 6 months (p = 0.009).
In the subgroup of caregivers whose loved ones survived, the intervention led to sustained reductions in both PTSD and anxiety at 12 months.
The multi-step model emphasizes early assessment, continuous communication, and structured follow-up after hospital discharge.
Findings suggest that proactive nurse-led support can alter the trajectory of Post-Intensive Care Syndrome-Family (PICS-F).

The Hidden Crisis: Post-Intensive Care Syndrome in Families (PICS-F)

While advances in critical care medicine have significantly improved survival rates for patients with life-threatening illnesses, the psychological burden on their families remains a profound and often unaddressed challenge. Post-Intensive Care Syndrome-Family (PICS-F) encompasses a spectrum of psychological symptoms—including post-traumatic stress disorder (PTSD), anxiety, depression, and complicated grief—experienced by family members during and after a loved one’s stay in the Intensive Care Unit (ICU). These symptoms can persist for months or even years, impairing the caregiver’s quality of life and their ability to support the patient’s recovery.

Despite the high prevalence of PICS-F, standardized interventions to support caregivers across the entire care continuum have been scarce. Most ICU support models are localized to the unit and lack the longitudinal follow-up necessary to address the long-term mental health needs of families. The Caregiver Pathway was developed to bridge this gap, offering a structured, nurse-led support model that spans from the initial ICU admission to three months post-discharge.

Study Design and Methodology

To evaluate the long-term efficacy of this model, Watland et al. conducted a single-center, non-blinded randomized controlled trial (RCT) involving 196 family caregivers of critically ill patients. Participants were randomized into an intervention group (n = 101) or a control group (n = 95) receiving standard care.

The Intervention: The Caregiver Pathway

The intervention was designed as a four-step longitudinal support system:

Early Digital Assessment: Within the first few days of the ICU stay, caregivers completed a digital assessment of their well-being, followed by a structured conversation with a trained nurse.
Transition Support: Upon the patient’s discharge from the ICU, caregivers received a supportive card containing contact information and guidance for the next phase of care.
Step-Down Continuity: An offer for a follow-up phone call was extended after the patient was transferred to a step-down unit or general ward to ensure continuity of support.
Post-Discharge Follow-up: A final follow-up conversation was conducted within three months after the patient was discharged from the hospital.

Fig. 4 steps of The Caregiver Pathway intervention adapted from Watland et al.

The primary and secondary outcomes were assessed at 6 and 12 months using validated scales, including the Impact of Event Scale-Revised (IES-R) for PTSD symptoms, the Hospital Anxiety and Depression Scale (HADS), and measures for Health-related Quality of Life (HRQoL), hope, and self-efficacy.

Key Findings: Reducing the Burden of PTSD

The results of the trial, published in Intensive Care Medicine, demonstrate that the Caregiver Pathway has a measurable impact on caregiver mental health. At the 6-month mark, the intervention group showed a statistically significant reduction in PTSD symptoms compared to the control group. The mean IES-R score for the intervention group was 25.8 [95% CI 21.9–29.7], whereas the control group scored 30.9 [95% CI 26.7–35.0] (p = 0.009).

By the 12-month mark, the overall effect on PTSD symptoms showed a continuing trend toward improvement (p = 0.057). While the absolute difference narrowed slightly in the total cohort, the data suggested that the early intervention provided a buffer against the most severe forms of post-traumatic stress during the first half-year of recovery.

Table 2. Effects of The Caregiver Pathway at 6 and 12 months

	Intervention group^a (n = 101)			Control group^a (n = 95)			Between-group differences^b
	n	M	[95% CI]	n	M	(95% CI)	MD	(95% CI)	p value
PTSD (IESR) total
6 months	81	25.8	[21.9; 29.7]	60	30.9	[26.7; 35.0]	− 6.8	[− 11.8; − 1.7]	0.009
12 months	83	25.0	[21.3; 28.7]	57	28.4	[24.1; 32.7]	− 5.0	[− 10.2; 0.2]	0.057
IESR intrusion
6 months	81	10.5	[9.0; 12.1]	60	12.8	[11.0; 14.6]	− 2.5	[− 4.7; − 0.4]	0.020
12 months	83	10.4	[8.8; 12.0]	57	11.8	[10.0; 13.6]	− 1.9	[− 4.1; 0.2]	0.077
IESR avoidance
6 months	81	9.2	[7.7; 10.7]	60	11.0	[9.5; 12.5]	− 2.7	[− 4.6; − 0.9]	0.004
12 months	83	8.9	[7.6; 10.3]	57	10.2	[8.7; 11.7]	− 1.8	[− 3.7; 0.0]	0.055
IESR hyper-arousal
6 months	81	6.0	[4.8; 7.2]	60	7.1	[5.7; 8.5]	− 1.2	[− 2.9; 0.4]	0.142
12 months	83	5.6	[4.5; 6.7]	57	6.4	[5.0; 7.8]	− 1.0	[− 2.6; 0.6]	0.235
Anxiety (HADS−A)
Baseline	101	9.9	[8.9; 10.8]	95	10.5	[9.5; 11.5]
6 months	81	5.3	[4.3; 6.2]	60	7.1	[5.9; 8.3]	− 1.07	[− 2.4; 0.3]	0.125
12 months	83	5.2	[4.3; 6.2]	57	6.7	[5.4; 8.0]	− 0.80	[− 2.3; 0.7]	0.286
Depression (HADS-D)
Baseline	101	7.2	[6.3; 8.0]	95	7.9	[6.9; 8.8]
6 months	81	3.5	[2.7; 4.2]	60	4.1	[3.1; 5.0]	0.3	[− 1.0; 1.6]	0.652
12 months	83	3.2	[2.4; 3.9]	57	3.9	[3.0; 4.7]	0.0	[− 1.3; 1.4]	0.950
HRQoL (RAND-12)
Physical functioning
Baseline	101	75.0	[70.6; 79.3]	95	71.5	[66.5; 76.6]
6 months	81	75.6	[70.2; 81.0]	60	69.9	[62.7; 77.0]	2.5	[− 4.4; 9.5]	0.473
12 months	83	78.3	[73.6; 83.0]	57	73.1	[65.8; 80.5]	2.5	[− 4.5; 9.5]	0.484
Mental functioning
Baseline	101	54.6	[50.0; 59.1]	95	51.5	[46.0; 57.0]
6 months	81	64.4	[58.9; 69.9]	60	60.2	[53.7; 66.6]	3.5	[− 5.4; 12.4]	0.447
12 months	83	68.6	[63.4; 73.7]	57	62.4	[55.8; 68.9]	4.9	[− 3.5; 13.2]	0.252
Hope (HHI)
Baseline	101	38.0	[37.0; 39.0]	95	36.5	[35.5; 37.6]
6 months	81	38.0	[36.7; 39.2]	60	36.4	[35.1; 37.7]	0.9	[− 0.5; 2.3]	0.218
12 months	83	38.3	[37.0; 39.5]	57	37.4	[36.0; 38.9]	− 0.4	[− 1.9; 1.1]	0.618
Self-efficacy (GSE)
Baseline	101	31.3	[30.4; 32.2]	95	30.5	[29.5; 31.4]
6 months	81	31.8	[30.8; 32.9]	60	30.6	[29.2; 32.0]	1.2	[− 0.1; 2.4]	0.069
12 months	83	32.3	[31.2; 33.4]	57	30.7	[29.6; 31.8]	1.2	[− 0.0; 2.4]	0.056

IESR Impact of Event Scale-Revised, HADS-A Hospital Anxiety and Depression Scale-Anxiety subscale, HADS-D Hospital Anxiety and Depression Scale-Depression subscale, HRQoL Health-Related Quality of Life measured by RAND-12: a 12-Item scale, HHI Hertz Hope Index, GSE General Self-Efficacy Scale, M mean, CI confidence interval, MD mean difference

Subgroup Analysis: The Impact of Patient Survival

Perhaps the most striking findings emerged from the pre-specified subgroup analysis of caregivers whose patients survived the critical illness. In this group, the benefits of the Caregiver Pathway were both significant and sustained at 12 months:

PTSD Symptoms: Caregivers in the intervention group had significantly lower IES-R scores (19.8) compared to those in the control group (29.1), with a p-value of 0.001.
Anxiety: Anxiety scores (HADS-A) were also significantly lower in the intervention group (4.3 vs. 6.8; p = 0.003).

This suggests that for caregivers of survivors, the structured support and follow-up provided by the Caregiver Pathway are particularly effective in preventing the long-term crystallization of anxiety and trauma-related symptoms.

Table 3. Effects of The Caregiver Pathway on family caregivers based on patient survival

Family caregivers to patients surviving the ICU stay
	Intervention group^a			Control group^a			Between-group differences^b
	n	M	[95% CI]	n	M	[95% CI]	MD	[95% CI]	p value
PTSD (IESR) total
6 months	55	19.8	[15.0; 24.5]	47	28.8	[23.1; 34.4]	− 10.3	[− 16.3; − 4.3]	0.001
12 months	57	19.8	[15.3; 24.2]	45	29.1	[23.5; 34.6]	− 9.9	[− 15.8; − 4.0]	0.001
IESR intrusion
6 months	55	8.0	[6.2; 9.9]	47	12.1	[9.7; 14.6]	− 4.0	[− 6.5; − 1.4;]	0.002
12 months	57	8.1	[6.3; 9.9]	45	12.2	[10.0; 14.3]	− 4.0	[− 6.4; − 1.6]	0.001
IESR avoidance
6 months	55	6.8	[5.2; 8.4]	47	9.8	[7.9;11.6]	− 3.6	[− 5.7; − 1.4]	0.001
12 months	57	7.3	[5.6; 8.9]	45	10.1	[8.2; 12.1]	− 3.0	[− 5.2; − 0.8]	0.007
IESR hyper-arousal
6 months	55	4.9	[3.4; 6.4]	47	6.9	[5.0; 8.8]	− 2.5	[− 4.4; − 0.6]	0.012
12 months	57	4.4	[3.0; 5.7]	45	6.8	[4.9; 8.6]	− 2.6	[− 4.4; − 0.7]	0.007
Anxiety (HADS-A)
Baseline	69	9.8	[8.2; 11.4]	64	10.4	[8.8; 12.0]
6 months	55	4.2	[3.1; 5.4]	47	6.4	[4.8; 8.0]	− 2.2	[− 3.7; −0.6]	0.006
12 months	57	4.3	[3.1; 5.4]	45	6.8	[5.2; 8.4]	− 2.5	[− 4.1; − 0.8]	0.003
Depression (HADS-D)
Baseline	69	7.0	[5.6; 8.3]	64	7.8	[6.2; 9.4]
6 months	55	2.7	[1.8; 3.7]	47	3.5	[2.4; 4.5]	− 1.5	[− 2.7; − 0.2]	0.021
12 months	57	2.1	[1.3; 3.0]	45	4.0	[2.8; 5.1]	− 1.0	[− 2.1; 0.1]	0.087

Family caregivers to patients who died during the ICU stay
	Intervention group^a			Control group^a			Between-group differences^b
	n	M	[95% CI]	n	M	[95% CI]	MD	[95% CI]	p value
PTSD (IESR) total
6 months	24	34.6	[26.6; 42.6]	11	32.1	[25.4; 38.8]	4.6	[− 3.0; 12.2]	0.240
12 months	25	33.7	[26.3; 41.1]	12	26.0	[16.3; 35.5]	11.3	[2.4; 20.2;]	0.013
IESR intrusion
6 months	24	14.0	[11.1; 16.9]	11	13.4	[10.7; 16.1]	1.9	[− 1.2; 5.0]	0.225
12 months	25	13.7	[11.1; 16.4]	12	10.7	[6.7; 14.7]	4.9	[1.2; 8.5]	0.009
IESR avoidance
6 months	24	13.0	[9.5; 16.4]	11	13.0	[9.6; 16.4]	− 0.7	[− 4.2; 2.9]	0.707
12 months	25	12.3	[9.0; 15.6]	12	10.4	[7.1; 13.7]	2.0	[− 1.6; 5.6]	0.273
IESR hyper-arousal
6 months	24	7.7	[5.1; 10.2]	11	5.7	[3.4; 8.0]	3.0	[0.5; 5.4]	0.020
12 months	25	7.7	[5.6; 9.8]	12	4.8	[1.7; 7.9]	4.1	[1.3; 6.8]	0.004
Anxiety (HADS-A)
Baseline	26	10.2	[8.4; 12.1]	15	10.1	[7.2; 13.0]
6 months	24	6.0	[4.1; 7.9]	11	6.7	[4.5; 8.9]	2.3	[− 0.4; 5.0]	0.090
12 months	25	6.8	[4.6; 9.0]	12	5.8	[3.0; 8.6]	0.3	[− 1.8; 2.5]	0.757
Depression (HADS-D)
Baseline	26	7.9	[5.8; 9.9]	15	7.0	[5.4; 8.6]
6 months	24	4.6	[2.7; 6.5]	11	4.0	[1.8; 6.2]	2.8	[0.7; 4.8]	0.008
12 months	25	4.9	[3.3; 6.5]	12	3.2	[1.2; 5.2]	1.2	[− 1.0; 3.4]	0.292

Expert Commentary and Clinical Implications

The Caregiver Pathway study represents a significant step forward in ICU family care. The findings highlight the importance of viewing the family as an integral part of the patient’s recovery unit. By utilizing nurses as the primary facilitators, the intervention leverages existing clinical expertise to provide psychological first aid and longitudinal navigation.

Mechanistic Insights

The efficacy of the intervention likely stems from its proactive nature. Rather than waiting for caregivers to seek help, the digital assessment forces an early pause for reflection and identifies those at highest risk. The subsequent conversations with nurses validate the caregiver’s experience, normalize their stress responses, and provide a clear point of contact, which may enhance the caregiver’s sense of self-efficacy and hope.

Study Limitations

As a single-center, non-blinded trial, the study has limitations regarding generalizability and potential observer bias. Furthermore, the intervention appeared less effective for caregivers of patients who did not survive, suggesting that this specific pathway may need to be supplemented with specialized bereavement support for those facing end-of-life scenarios.

Conclusion

The Caregiver Pathway offers a scalable and effective model for reducing the symptoms of PICS-F, particularly PTSD and anxiety. By providing structured support across the ICU-to-home transition, healthcare systems can better protect the mental health of those who care for our most vulnerable patients. Future research should focus on multi-center implementation and refining the pathway to address the unique needs of bereaved family members.

References

Watland S, Solberg Nes L, Ekeberg Ø, Rostrup M, Hanson E, Ekstedt M, Hagen M, Børøsund E. Effects of The Caregiver Pathway intervention on symptoms of post-intensive care syndrome among family caregivers to critically ill patients: long-term results from a randomized controlled trial. Intensive Care Med. 2025 Nov;51(11):2042-2053. doi: 10.1007/s00134-025-08139-x IF: 21.2 Q1 B1. Epub 2025 Oct 6. PMID: 41051554 IF: 21.2 Q1 B1.